So now that I have sufficiently scared my husband into thinking I’m going to bankrupt us, I can go back to talking about my MS and how I got to where I am today. But first let me say that this shopping thing is real. I laid in the bathtub and shopped, the night after my last post, for awhile before I even realized what I was doing. I shopped for household goods that we need but I didn’t order anything. So progress I guess…
And speaking of progress, let me update you on my diet since I left you there. I did follow the Paleo Diet for the full 90 days and felt amazing. I regained my life back in a mere 3 months and ‘ate’ every word I ever said about diet being unable to affect my MS symptoms. I was shocked at my results. I had not had this level of energy for years. I felt GREAT.
Growing up as a teenager especially I remember having times of feeling extremely LAZY. My family would want to do something remotely athletic and I would dread it. Even skiing, which I loved, was becoming a chore. I perpetually thought I just didn’t move enough because I was a firm believer that “energy breeds energy,” as that was how I was raised. If I’d get off my ass I would feel much better but yet there were times it seemed impossible.
After my diagnosis I remember feeling justified. See, you suckers, I wasn’t lazy, I was SICK! It explained why I could always sleep longer and sounder than anyone else. The belief is that MS starts developing in your teens and is a culmination of a series of things that cause someone to develop it. It’s quite fascinating if you read the linked page about the 4 things that must be in play for MS to develop. It’s like russian roulette, and I got the chamber with the bullet.
For years I used to drag myself around the house. I would sit on the couch all day because my limbs felt like they weighed 300 pounds each. I would sit on the floor with my kids when they were little and fall asleep. Let me tell you, it’s pretty scary to wake up and realize you have been asleep while your young children are playing by themselves! I have missed school pickups, school parties, sporting events, birthdays and all because I was too tired to get there. If I ask my kids what I was like when they were young they say “asleep”. It breaks my heart.
Right after I was diagnosed someone emailed me this story. It is called ‘The Spoon Theory.’ It is written by Christine Miserandino about her explanation of life with a chronic illness. When I first read it I felt like my MS experience was finally put into words. I sent it to all my family and friends and tried to explain to my young kids. I can remember my daughter asking me, ‘how many spoons do you have today Mommy?’ But I had a hard time knowing how many spoons I had. I simply knew they were running low and it was only 10am.
Not long after I was sent this story, we bought our first iPod. We thought it was the greatest thing ever and after using it for awhile I felt like I could relate better to the battery on it than actual spoons. I think I struggled because I was never sure how many spoons I ‘should’ have when the day started. Some days I would wake up with 4 and some days 20. But the battery on the iPod suddenly became more tangible and I started adjusting the spoon theory to the battery. Then my daughter’s question became ‘how much battery do you have Mommy?’ and I felt like I could give her an answer that made more sense.
The hardest thing about MS for me has been the fatigue. I would wake up some days, after sleeping 10-12 hours and still be in the ‘red’ on my battery. I would have to stay close to home all day because I needed to be plugged in to my bed. I can remember going to the grocery store, for years, and being so overstimulated by the lights and choices that I would have Rusty meet me at home to carry the groceries in and put them all away. I had to go straight to the couch. When I gave up the things in my diet that increased my inflammation, that all went away for me. I was back to being the ‘energizer bunny’ I had been when I was younger…and it scared me.
When I first got my energy back I remember being so scared that I would do something and it would all go away. I knew I couldn’t keep up the strict Paleo diet so I started adding things back in slowly to see what I could tolerate and what I couldn’t. I realized that gluten was definitely my BIG TRIGGER for the fatigue. I could envision it coursing through my body gobbling up my energy as if it was PacMan. I don’t believe gluten caused my MS but taking it out of my diet definitely decreased the systemic inflammation I had and made me feel so much better.
I still have maintained the gluten free lifestyle. Occasionally I will get ‘glutened’ and I get instant headaches and fatigue. It takes 14 days to get the gluten out of your system, so I get real strict after that. I can have a bite or two if it is a small ingredient and not be too bothered, but I know for me it is something to watch. My next ingredient I really need to work on is SUGAR. But just like I could never imagine giving up bread, I am dreading the idea of no sweets. As with gluten, I think I will eventually enjoy the way I feel much more than what those bites are worth.